Hi! I'm 54 and in November was thrust into the role of caregiver for my husband who is 61. We are both still working full time and hoping to keep him working until October. Not sure after this week if we will make it. We live on a family road and share a driveway with his youngest brother and family. They have been very supportive. His mother 86 lives across the road and her words to me were " remember you married him for better or worse and in sickness and health!" That was her way of telling me she will not help me take care of him. His sister lives out of state and is in denial and his younger brother wanted to know if it was hideratary. Now he thinks he has it. My stepdaughter and grandchildren live near bye and she only calls if she needs something. I'm overwhelmed with paperwork and caregiving. He is waking me up 2-4 times a night to tell me something or because he is flailing in his sleep. It's so hard to watch him struggle every day to do things that once came so easy. Some days I feel like I'm barely keeping my head above water. Do you ever get into a rhythm and this start to smooth out? We have a neurology appointment in April in a town 1 1/2 hours away it beets the 9-12 month waiting list we are on in our town. We have another appointment on Wednesday with his family doctor and I'm not looking forward to hearing how much he has progressed since last month. Any help anyone can give me would be wonderful.
My first thought is that you need to be getting enough sleep. I would definitely figure out a way to sleep separately. And you are smart to get that neurology consult as soon as you can, even if you have to drive the 3 hours total to get it done. It's invaluable for care planning...to know what you're dealing with...with a definitive diagnosis. And you need to get the financial accounts, assets, etc. into your name only; and make sure you have a durable power of attorney to make all decisions as need be. Make sure you see an attorney who understands this stuff--an elder law, or estate planning attorney. I'm not sure whether your husband will be cooperative or not, but these are things that need to be done. In terms of family: Well, we've all been there. Some "get it", most don't, and relatives may or may not be helpful. Often not. Sigh. Welcome to the site, Susan--I'm sure others will be along to chime in. You have come to the right place.
Welcome susan everyone here gets it. This site is full of support, ideas and just a great place to vent, no judgement. So come often use the support system here it has been a life line for many of us.
Welcome Susan. What type of work does he do that he is still able to work full time? Sounds like he has a lot going on and he may not make it to October. Who diagnosed him if you have not been to a neurologist yet? I would make sure they eliminate treatable causes if it has not been done already.
It is tough. I was 55 and my husband was 60 when he was diagnosed. So hard to comprehend all that needs to get done in prep for the future but also deal with your retirement hopes and dreams are over. You will have to file for Social Security Disability eventually so start getting prepared now. I had copies of all my husband's medical records and sent in with the application. Reason: I was told to because of often the doctors can take a long time to get the information in to SS so in the meantime they have the copies to start processing, then wait to finalize when the doctors records get there. Beings he is EOAD, it is fast tracked so should not take long. My husband only had to meet with their neurologist for final approval. When we met him he something like 'it is evident he can't work, so this is a just a formality chat'. It was very relaxed, very informal. Took about 3 months and his SSDI was what his SS would have been at 66. Also, Medicare kicks in after 2 years, so if you need that insurance important not to delay too long.
Might try melatonin for sleeping or peanut butter to relax his legs. Magnesium also helps with the legs. Has he a history of restless leg syndrome or flailing? I was just reading that magnesium oil/lotion is good for restless legs as it is absorbed through the skin and works better.
It has only been 4 months since the diagnosis, so it does not surprise me everything is still spinning! Try to take deep breathes to relax, remember to take some time for you. Even more important since you are working full time.
Do not hesitate to come back her to ask questions, get support or just vent which we all often need to do.
As for a rhythm - with this disease seems we just get into a 'norm' and they change.
Thank you everyone! His family doctor did the SLUMS Test, lots and lots and lots of blood work and a CT Scan of the brain. All came back negative for the other things they were looking for. I guess we are lucky in respect to SSDI as we've been told by his work he will go out on disability short term for 6 months then long term until the age of 65. Then he will go to SS. Our financial guy also said that. He is a manager of health and safety, environmental and quality systems for a local manufacturing company. There is a lot of stress right now with 2 big projects and every month he is progressing faster than the last one. He only drives to and from work right now and I just checked his driving Saturday but it won't be long until he can no longer drive. I've been reading a lot of books and to day I came across an explanation that I will be asking his doctor about Wednesday. APPD primary progressive aphasia because he has started talking do soft that I have to lean in or ask him to repeat and sometimes I think his brain thinks he has verbalized his answer when in fact he's said nothing and his words are starting to slurs or be garbled. He also has started making inappropriate sexual comments to me and that scares me that he will do that at work. I have a good communication with his boss and the VP of the company. His boss and I communicate weekly. The want him to stay as long as he is able and are working with us to keep him working his boss is his brain and work and I am his brain the rest of the time. I'm exhausted tonight I've been having trouble sleeping due to the worry and stress from his family. So today I decided that if they are not helping they can have an opinion but I am not going to let it affect me. My priority is him and myself. I've stopped saying yes to very one else and being their door mat. I've been staying up later until 11-11:30 to keep an eye on him and getting up at 4:30 to do a few things before I leave for work at 6 am. I broke down this week and called for help from our senior center and Tuesday I have a cleaning lady starting for 2 hrs every other week. That was hard for me to do but I realize I can't do it all. We also put a "help list" together so if someone asks what we need I can give them an answer.
It nice to finally know where I can come to talk with other who get that he looks health and is very good at pulling it together to hide this damn disease from others!
Hi Susan, As I read your story it parallels mine so much. I was 50 and my husband 58 when he was diagnosed with EOAD (officially Nov. 1, 2012). Similar testing... lots of blood work to rule out other diagnoses, CT scan. He also had a spinal tap (PET scans were not covered by our insurance) and a neuropsych exam. All that combined led to the Dx. Just a note of caution and something to check with the disability. His short term should be no problem and with the Alz dx things went very smoothly once all the paperwork was done. However, once the long term kicks in, don't be surprised if the Insurance company for the LTD requires him to file for his SSI. They know he will qualify and that will reduce their liability for payout. That's the way my husband's worked, so you will just want to make sure. The way ours worked is that he still received the full amount of disability payment he qualified for it was just a matter that SSI was part of the payment and the LTD insurance made up the other portion. My husband also suffers from Primary Progressive Aphasia. Communication can be very difficult and you probably already are feeling some of that. As for the continuation of working, you will need to decide if that is worth it since he does have some income protection. My husband had to quite right away as he was a Driver's Education Instructor at a High School and it was deemed too high a risk for him to continue. You didn't mention if he was on any medication, so I would suggest speaking to his doctor and/or neurologist about his behavior as of late and ask about options there. Depending on what they prescribe, that could affect his driving. I know you must feel overwhelmed. Getting through the mountain of paperwork was the hardest thing for me. If it helps, you might consider taking a day off of work just to get it done and allow you time to focus. Hang in there. We're all here for you. Just take one day at a time. You do the best you can and that's all you can do. That's all any of us can do. :)
Yes in December he started Donepizel and I asked for Tramadol for his arthritis and something for the anxiety so they put him on generic Lexapro. That has helped emensley. It helps that my sister-in-law is a well respected nurse and she has been going to his appointments with us. She is also a patient of my husbands family doctor so the doctor knows her well and they get along. She has been wonderful support. Well good night all thanks for making me feel that I'm not alone on this nightmare journey.
I'm thinking of asking the doctor to put him out on disability on Wednesday. I'm really scared!! I feel like I'm loosing him so fast with al the stress he's under at work. He didn't sleep last night so neather did I. I can't function like this. I'm so exhausted that all I want to do is cry. I'm on my chariot
It's amazing to me that he still goes to work--sounds like you are right that that can't go on, or at least, not much longer. I'm wondering if the doctor can prescribe something that might help him sleep...so you can get some rest. I'm not clear on why you have to be up at night with him though--if he is still functioning enough to drive to work (although sounds like maybe he shouldn't be)--couldn't you just sleep in another room, and let him be up at night if he wants to. I don't think you're at the point yet where he has to be supervised for safety (wandering, falls, incontinent on inappropriate things, turning on stove)...so I'm not understanding why you have to stay up, too. Does he still understand that you have to get your rest so you can go to work? Sorry if I'm missing something here.
Here is the knotted rope that we toss to each other sometimes. Just grab the end and hang on for dear life! x---x---x---x---x---x---x---x---x---x---x---x---x---x---x---x We are holding the other end--won't let you fall.
Thank you!! He has this need to tell me things. He says it's a safe feeling to be able to talk and feel me near him. He says he feels so lost. Is that normal what ever normal is!?!
was he like this before the Donepizel? The reason I ask is for some it can have unwanted side effects one being trouble sleeping and leg cramping. Where he needs to tell you things, could it be the anxiety from work is manifesting in this behavior? Stress for our spouses with dementia can make them worse. Take stress away and often these symptoms will subside. Of course we have to play the guessing game and try before we know. Remember - Donepizel, galantamine, namenda are only bandaids. They only work in 30% of the patients to help them to stay cognitively functioning longer while the disease rages on. Unfortunately, we don't know if they help unless there was a marked improvement when they first went on the drug or we remove it. Found this on Tramadol: "As with many medications, Tramadol side effects may be magnified when the medicine is used in elderly patients. Of these tramadol side effects, mental confusion is often the most apparent. Elderly patients with dementia or Alzheimer’s disease may exhibit increased symptoms of confusion or agitation while taking tramadol.
I know you say your SIL is a nurse but as we all have learned here - if you have seen one Alzheimer's patient you have seen one. No one is a like. Drugs interact differently with them than in a normal brain. I begged the doctor to add namenda with my husband's galantamine early on because researched showed the two worked better (if they worked). My husband could not take it - too many side effects like vision changes, brain fog and easily exhausted. He was so happy to get off it. Others here can tell of the problems their loved one had with different combos of drugs.
You say you plan to wait until he is 66 to take social security - why if he can get the same amount now as then? SSDI (SSI is something different, not disability) should be applied for when he has to stop working which sounds like it wont' be long. Sounds like work might be stressing him so much it may be hindering his ability to continue functioning in the day to day activities. Is there the possibility to take a long 4 day weekend to see if there is a change? Could driving be adding to the stress? My husband finally said one day (after many discussions to get him to give it up) "i can't do this anymore'. All the multitasking necessary to drive was too much for him to process anymore.
What about medical insurance? Will he still be covered by the short term disability and the long term? Will he be covered by your medical at work? If so and you have to quit working before he is 66, what about medical insurance then? If under 65, when he goes on SSDI it takes 2 years to be eligible for Medicare, so wise to consider taking SSDI when he can and not waiting.
As your thread says - it is all overwhelming. Even more overwhelming when we have to be our loved ones advocate researching to see if their medications might be causing additional problems.
You are fortunate in that he knows he has a problem. Many here have a spouse that refuses to acknowledge or does not realize they do.
I wonder if Ativan would be helpful, just to relieve the anxiety. Not sure if he is old enough for services from Office for the Aging in your area--they can be helpful about the "case management and coordination" you have to do in figuring out what he's eligible for and what to apply for when. Or just meet with an attorney who specializes in this stuff, as I said above. You need to start early to do the right estate planning--you need to get the care for him without impoverishing yourself any more than you have to. At 54, you have a long way to go. If you two have any money and property, you for sure need to plan for how to hold onto it.
Hi SuzG and welcome. My heart breaks for those of you whose young spouses get this disease. (I was in my fifties when my husband was diagnosed but he was 78 so at least he had good years in his fifties and sixties.)
I'm not so sure it is a good thing to realize you have Alzheimer's (which they call "insight"). My husband knew he had dementia and it was so sad to see him watching himself become more and more impaired. He felt like he was doing everything wrong and it was all I could do to pretend that he was doing everything right and to encourage and praise him.
I would go with stopping work and going on disability now. He will have a more graceful exit from work and he might do better with the removal of work related stress. It will be difficult to care for him during the day. At first he might be able to be home alone but you must plan for adult daycare or having a helper at home. I have been through this with my wife.
Your comment about LTD is a little unclear. You will need to apply for SSDI, I am sure that the LTD insurance company will require it because this will probably cut the amount they will have to pay. Most LTD policies will deduct $1 from benefits for every $1 of SSDI received, but better policies use more generous formulas. The SSDI payment will be equal to what he would receive in Social Security Retirement if he retired at age 65. In other words, no penalty in Social Security benefits to get SSDI now.
Hello, sorry to hear about everything. I'm 45 and my husband is 52 and it's tough. It helps my husband when the stress level is reduced, at work (he works 80%) and at home. If the work or chores that he does are appropriate for him, he feels a lot better because he can do it without getting frustrated. He has a supportive employer and can continue working, we are both glad because then the days are structured for him and I can work too. It will definitely be tougher when working is no longer possible for him. Walking is his favourite pastime, alone or with me or friends, it helps him clear his head and cope. Have you heard about the test medication Aducanumab from Biogen? Depending on where you live, you might want to check it out. My husband is in the program and he has stayed quite stabile the past year, although we don't know if he has the medication or the placebo. My husband thrashes around in his sleep and gets up very early and we have separate bedrooms, which works well for us. We live in Switzerland and i visit a support group for caregivers of early onset once a month which helps me.